Recently seen Rheumatologist. Again, she states it is not PMR. She doesn’t know what is causing the systemic inflammation and the physical symptoms. I accepted the fact, and now committed to treat the symptoms despite not knowing diagnosis. Off prednisone and only taking NSAIDS. After reading about Long COVID, it’s seems to mimic my symptoms. I did have COVID in early 2020 than followed up with caring for hundreds COVID positive patients. Or it may be fibromyalgia. I simply don’t know.
It was funny when the rheumatologist stated, “if you were 10 years older than this would warrant a diagnosis of PMR”. I’ll be seeking another primary care provider to get a second opinion.
Want to thank you all for the wonderful support this past year. I am truly grateful.
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I am fighting a similar fight here. Saw a third theumy who refuses to dx PMR because my symptoms started at age 48 and 11 months. Even though I am 52 now, they won’t even discuss my symptoms and progression. They simply declare PMR is impossible at my age, must be RA, and push other drugs. The newest consult won’t consider low dose steroids and would rather put me on methotrexate or lef-something-or-other vs 2mg prednisone. It’s maddening. PMR cannot possibly know how old I am! At this point my only hope is that my new GP that replaces my current one who is leaving will continue to rx the prednisone. I refuse to take drugs with such debilitating side effects when I am successfully at 2mg prednisone.
If you are in the UK, I would consider a second opinion. In the US you basically have a fight ahead of you if you are under age 60 or 70.
Where on earth do they get this idea from? The youngest case in the literature was a 24 year old male. There is a biopsy proven case of GCA in a 37 year old male in South Wales (the pathologist got it right after he died of a stroke after a missed diagnosis). There are many documented cases in under 50s - and PMR is a diagnosis of exclusion. They can say it is RA - but they have to prove that. If 2mg is doing the job, why on earth any doctor would want to change it for MTX of leflunomide is beyond me!
The rheumatologists here are so condescending. He said something like, “Well what do you want? To stay on the 2mg of prednisone?” My answer was, “Well I would love to be off prednisone completely, but at 2mg I am not concerned with side effects.”
Huh! What do we want? whatever actually manages our symptoms and gives us a decent QOL. Not too much to ask for is it? It is another matter when there isn't anything that works - but if 2mg pred does ...
Yes, 2mg of prednisone helped me as well. I found I did not suffer from the side effects. It seemed to take the edge off the discomfort. I wouldnhave stayed on, but it does feel good to be off. I don't like taking medications.
Dad2Cue, once again your input is truly valuable. Yes, this is my working diagnosis at the time is systematic inflammation with unknown prognosis. The PET Scan and labs show this. Plus I have lymphnode enlargement in my left axilia. Plus, they said I don't show any decrease strength or point tenderness I cannot have PMR.
They suggested I start colchicine for its off label use and diagnostic properties. Been taking for 3 days now and don't feel improvement. The research papers I've read Colchicine should help systematic inflammation, but will not help autoimmune disorders such as PMR. I was going to trash it, but I've also read it has cardiac protective benefits so I'll take it. I'm only taking celebrex and colchicine along with a PPI and Statin.
I have an appointment with the VA in December so we will see what they will say. Currently I'm stiff as a board with decrease mobility. Although, the plus I'm not suffering from prednisone withdraw and adrenal insufficiency. These symptoms I can live without. 😫
Thank you all. Hope I can stick around in the group since I do enjoy everyone's input.
Yes, you are correct. This comment by the Rheumatologist threw me for a loop. I have learned and read PMR do not show a decrease, but can be construed as a loss of strength. This I found to be true in my situation.
This is verbatim from the report:
IMPRESSION:
1. Diffuse mild marrow hypermetabolism could indicate marrow hyperplasia in
response to a systemic inflammatory process.
2. Subtle FDG accumulation surrounding the bilateral glenohumeral joints
could indicate arthropathy of the shoulders.
3. FDG accumulation in 1 cm left axillary lymph node, favoring reactive node.
it’s interesting, the diagnosis of PMR is like the orphan. When I went into the ER with 10/10 pain in my hamstrings, and they did a bunch of blood work up, the Hospitalist read down a full list of possibilities (including Amyotrophic Lateral Sclerosis - I’m wth is that? It’s Lou Gehrig's Disease, that put a pit in my stomach) then after further diagnosis stated PMR. Like a catch all after crossing off everything else. Final statement was I was very close to the age group (around 70 yo, I was 64)
By the same token my wife is having intestinal issues. Been ruling everything out via tests. They said at most recent office visit it could be IBS. If we don’t know what the problem is let’s just throw in a catch all term.😂
I think I have PMR, but I’m a 43 year old male. I also live in the US. They said that is unlikely because of my age, the last rheumy I saw said it was up for discussion but not very likely. My symptoms match up better with PMR than any other Autoimmune disorder, but yet I’m too young. I got diagnosed with IBD arthritis and then inflammatory arthritis.
" there isn't much difference between inflammatory arthritis and PMR"
The effects/symptoms felt may be similar - but inflammatory arthritis affects and damages joints in the long term. PMR does NOT cause lasting damage to joints and the stiffness is due to inflammation of the soft tissue structures surrounding the joints.
I have pain in my shoulders and down my arms when sleeping. No pain otherwise in the shoulders unless I try to do get down on the floor and get up. Can’t do a push up without loads of pain, could do around 100 without stopping before this started. I get a lot of pain down my hamstrings and butt, especially when sitting in a car after 20 minutes. Also, when I crouch down in a squat position for more than a few seconds. Very stiff in the hips, hard to put on socks in the morning. Painful when using adductors. Then there is the carpal tunnel. Jaw tightness. Everything is bilateral. Inactivity makes things worse. Overall achy feeling, like I have the flu. I think my strength is still there, but I have to fight through the pain. I’ve lost muscle which in turn means losing strength. I think loss of strength is inevitable if you deal with it long enough.
All sounds as if it could be PMR that is not or inadequately managed. Age is only a factor in that it becomes more common as you age and after 50 becomes pretty likely. It doesn't mean it can't happen under 50 - just it is less usual. Prof Sarah Mackie, probably the top PMR expert in the UK, says she has several patients in their 40s.
No..Massachusetts. I went school at the University of Maryland and played football there from1997-2000. This came on in December and prednisone helped immediately. I’m doing ok with the ibuprofen…would like to get another opinion though.
Hi, I thought I had PMR and GCA 12 months ago when I had textbook pain for both (except my hips and lower body did not hurt). I had a temporal biopsy and GCA was confirmed so put on 60 mg of Pred. All pain disappeared within 48 hrs - heaven ! My Rheumo was fairly sure that I did not have PMR and after doing loads of research and using my own diary that I had been keeping since the first pains started 3 months prior to diagnosis I came upon something very interesting. About 20% of the population who are prescribed Statins for heart conditions have very similar pain to that of PMR - painful and aching shoulders, arms, neck. I confirmed this with my cardiologist, and he said to stop the Statins. Since then, I have come across this numerous times and my pain doctor is very aware of this too...........so my question to you is do you take Statins?
Statins are the cause of my PMR. It began a week after taking them. GP prescribed them three years ago, because I have Diabetes 2, just as a precaution, no high cholesterol. I immediately stopped taking the statins but symptoms became gradually worse. I told my GP that I thought I would be using a wheelchair very soon.
She then ordered blood tests and raised CRP, ESR, led to PMR diagnosis. Started on 15mg and now down to 5mg.
Dividing dosage half 12am and half 12pm works for me, no stiffness in the morning. It has taken this long to be able to walk short distances.
Never thought statins may be the factor. I have been on statins for 25 years. I did stop when I started to feel like this, but the symptoms remained. So, I started taking them again. I have been off prednisone now for a week. Pain is back in full force. I honestly miss the prednisone for it pain relief, but not it's side effects.
I think so. The money is better, but it may be awhile before they’ll be able to compete with the big boys. Locksley is a great recruiter, so we’ll see. He was my position coach when I was there.
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